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Monday, December 7, 2009

Holiday with the Hemos...

It has been brought to my attention that a lot of my blog entries are open ended. I also tend to leave out smaller details from time to time. So from now on, I will try to be better about updating ya'll on the outcomes of my past b*tching/complaints AND I'll link more references in my posts. But...if I ever leave anything out or you have a question, feel free to leave a comment (you can do it anonymously) and I'll answer 'em.

Big thank you (you know who you are) for bringing this oversight to my attention. :)

So, let's cut to the chase, shall we? In case you were wondering...

Things have been quiet with Kevin's teacher lately. The scare tactics she used seems to have worked (for now) and Kev hasn't messed up since his trip to the Principal's office. battle is ongoing and I'm still continuing to document EVERYTHING. A very good friend of mine has even given me some pointers on how to effectively handle the problem at hand. It ain't over yet.

BTW -- I was whining for Nerds at the corner store. :)

Now, on to the real blog update!!

On Sunday, we went to Children's Hospital in Oakland to attend HFNC's holiday party. It was nice to spend some time with our "hemo family". John and I tend to be shy when we're around new social circles, but we're definitely getting used to attending more and more of these events. (Anyone want to come to a HFNC Crab Feed on January 21st? Let me know!) The bleeding disorders community is THE BEST and our little family is starting to feel increasingly blessed to be a part of it. Niki's beautiful "pinay hemo sister" (I'll call her "Ate A") was there and I had the opportunity to meet Ate A's mom. Let me just say that I felt so relieved after I spoke with her.

FINALLY someone who fully UNDERSTANDS what it's like to be a Filipino mother of daughter with a bleeding disorder!!! Ate A's mom totally understood my secret agony.

Our culture is a complicated one and things (medical jargon) often get "lost in translation". Some people in our community (Ate A & Niki's) family just don't seem to comprehend what it means to have a bleeding disorder. So, the conversation I had with Ate A's mom made me realize just how valuable Niki's "extended family" will be in the years to come. Don't get me wrong, I LOVE our family and the massive amount of support they give us, but things just aren't the same when you have a child with a chronic condition. There is a huge stigma (fear of the unknown maybe?) that surrounds Niki's condition and I think it's because Ethan died from it.

I don't ever want anyone feeling "kawawa" for Niki.

But alas, it happens. I've tried to explain her condition in simple terms -- to assure people that she doesn't have a death sentence -- only to have it still be misunderstood. I even found out that someone thought Niki was going to be "retarded" once. Oh and for the record, I hate that word. It's so....derogatory.

And, it's really heartbreaking to know that some people can be so insensitive.

Believe it or not, Ate A's mom went through the same things I did. Especially after her own daughter had to wear a helmet and endured numerous hospitalizations. People in their own family felt "kawawa" (sorry for) Ate A too! So, do you know what happened? Ate A grew up to be a strong, confident young woman.

I can only hope that Niki will grow up to have the same "I don't give a f*ck what you think" mentality.

All in all, the holiday party was a blast. The kids got toys, met Santa, and ate lots of delicious grub. Really, I hold our "hemo family" very near and dear to my heart. :) I'm attending a Hemophilia Walk information session this Wednesday so I'll update you all on the details of that event later.

In the meantime, here's one final funny story I thought I'd share.

Anthony decided to have an huge "crying and rolling on the floor" tantrum because I put gravy on his mashed potatoes. The food was right next to the stage where the holiday carolers were singing so I was totally embarrassed. John was tending to Niki in another area so it was just me, the boys, and two handfuls of plates loaded with food. I managed to get Anthony to follow me back to where John was sitting, but on occasion he would sit on the floor (with tears streaming down his face) in order to express his contempt for said gravy.

Oh, I wish I had an extra hand to take a picture!

We were almost to the area where John was when Santa (with his sleigh bells ringing) started a mini-procession toward to stage. Santa was walking in the same direction where Anthony was sitting and pouting. My hands were still full with plates full of grub, so I pleaded for him to get up, but he just sat there and cried. Santa was about two feet away when Anthony suddenly stopped crying, stood up, wiped his tears, and acted like a complete angel.

"He knows when you've been bad or good, so be good for goodness sake!"

I suppose my sweet little Boo knows that phrase well. But...not well enough. As soon as Santa passed, that little bad ass sat back down and proceeded to cry again!!! Lol! Who would have ever thought that gravy would piss him off so much?!

But this my friends, is just another day in the life of lion taming. :)

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